Monday, March 29, 2010

Debby Downer

(Charlie and mommy, 8 months, Photo by Cindy Penner)


















I've been super moody and emotional regarding Charlie, just finding it hard to look at the bright side...there just hasn't seemed to be a bright side this past week. Ever since all of the medical mishaps I just feel like Matt and I are walking around narrowly escaping land mines. Not a good feeling. I am constantly feeling overwhelmed with information while at the same time constantly feeling under informed. There just seems to be so much conflicting information out there and I'm beginning to feel like a burden on the medical system...are they just trying to make Charlie comfortable while she dies or are they trying to help her LIVE comfortably...I can't tell yet, and I think I'm beginning to get a little paranoid...or am I? I do want to say though that we are working with about 12 specialists right now and I really don't believe any one of them tries to intentionally make us feel this way, it's just that I don't think they get the chance to come together too often to combine all of their information to help them make the best decisions regarding Charlie's care. BUT, they all do what they do really well, and we are fortunate to have them on our team.


We have so many great friends and family members that have been supporting us through all of this...even complete strangers! Wow! It feels really amazing to know that you/they are rooting for us and keeping us in their thoughts. And of course there always has to be a few insensitive people out there, just to keep you grounded. We've been told, "Don't worry, you'll have more kids." And yes, hopefully that's true, but not quiiiiite the thing to say...she's not a gerbil. When I told someone that Matt and I had a 1/4 chance of conceiving another baby with SMA, they told me "You need a new husband." Neat. And when Matt was trying to explain to his uncle in an argument that we were really hurting about this situation, exclaiming "My daughter is DYING!" His uncle replied with, "Oh Matthew, you're going to Hawaii, it can't be that bad, she's not dying for a year or two!" Suggesting we get over ourselves and to stop being so dramatic. Yup, that one's my personal favorite. I will NEVER get over that one. I do realize though that people don't always know what to say in these situations, and most people mean no ill will, it just comes out wrong. But please, I'd prefer you kept talking to us rather than avoiding us because you don't want to say the wrong thing!
Luckily, most people are beautiful. Actually, since we became aware of Charlie's situation, I've never been more in awe of people. I have learned that it is generally human nature to want to take care of each other. This is a situation which almost everyone can picture themselves in, and I have seen it break many hearts, which in turn fills mine up with gratitude and love. I'm not saying I want people to hurt like we do, I just really appreciate the empathy.


Charlie's breathing has gotten raspy this week which either means she's getting a cold (right before surgery) or she's becoming unable to handle her secretions properly...either way, it's bad news. When Matt and I see a new change in Charlie such as this, it reignites the fear of the future in us...we seem to go up and down in between the changes in Charlie. Right when we get used to something (no head control) we get a new ailment (difficulty breathing) SMA really keeps us on our toes. We have an appointment this week to get Charlie fitted for some foot splints, her feet are starting to curl closed. We were also told to make sure we exercise her legs because they are stiffening up in the 'frog' position, so we've been working on that as well.


I'm really anxious about both a long AND a short future with Charlie. If she's here for a longer time, my new career is nurse Cherie. I will be suctioning her, feeding her through a g-tube, exercising her, performing CPR, medicating her, etc. And if she's only here a short time, I will spend my life missing her and forever feeling like a huge piece of me is missing. Obviously I am willing to do whatever it takes to to keep her with me/us as long as possible, I'm more worried about whether or not I can fulfill all of my duties as nurse Cherie. My friend Christie and I have some pretty good chats about life, marriage, babies, babies, babies, and careers...we were talking the other day and she asked me what my future plans were (because I'd just finished school for social work before getting pregnant) and I thought about it a second and said, "This is my job." and for a second (a fleeting second) I felt a little ripped off again. I don't get a choice in career anymore. This is it. Until it isn't it. And then my career will be mourning....how long does mourning last? Do you work while you mourn? I don't know the answers to these question, but I think about these things all the time. When you decide to get pregnant your future flashes before your eyes, babies, toddlers, kids, teens, adults...at least that's what I saw...so, I'm still getting used to things not turning out the way I/we thought they'd be.


My parents are on their way here right now. That's been a positive in this situation. We've gotten a lot closer since Charlie's diagnosis. My mom hasn't always been the best with expressing herself to me and I've always felt like she's never really acknowledged my success' in life, but lately, she tells me she loves me all of the time. She texts it to me and Matt almost every morning. She's also started telling me how proud of me she is and that I'm an awesome mother, and as much as the old rebellious teenager in me would like to think I don't care what my mom thinks, I totally appreciate the recognition and praise, it means the world to me, and it couldn't have come at a better time.






Friday, March 26, 2010

Baby love.

(Charlie and mommy, 8 months old. Photo by Cindy Penner)


















Why do I always seem to have way to much fun the night before what I THINK is going to be a quick routine appointment for Charlie, but turns out to be an absolutely heart wrenching experience?


Last Monday I did a little belated birthday partying with a couple of my girlfriends...a few bottles of wine and an ouzo shot later, I was sloppily brushing my teeth and getting into bed at 1 am and setting my alarm for Charlie's supposed "routine" 9 am appointment at Children's Hospital with an occupational therapist. I thought Charlie was just going to have her changing physical needs assessed and that I'd be in and out within a half hour. The half hour appointment was two and a half hours long. I always seem to forget/block out how hard it is to watch my obliviously happy baby girl splayed out naked on an examination table, with doctors and nurses struggling to negotiate her floppy limbs on the way down to it, to check her chest and her breathing. It is especially difficult to have med students sitting in on my visits, as it happened this time, watching the doctor maneuver Charlie and discussing her approaching g-tube surgery. I usually avoid eye contact with the students...because if I look, I can see what they are thinking..."poor lady, awww, her baby is going to die, I've studied this...so awful". Or at least that's what I assume they're thinking. It's just that I know they carefully study hurt or dying children all day long, and i can't help but wonder if Charlie is just a stepping stone on their journey through med school... is she just another dying baby to them? I know that it's probably not the case, but i can't help but feel that way. They'll never know Charlie long enough to have their hearts melted and to see what a travesty it really is that she's being punished with this awful disease.


A neurologist, an occupational therapist, two med students, and a respirologist later, Charlie and I were on our way home. Finally. It was a lot to process considering that I'd left my head at Takis' Taverna the night before... all I could think about was water. Lots and lots of water. Lesson learned!


The next day got even heavier, but at least this time Matt was with me and the ouzo haze had cleared. We started the morning on the wrong foot when we showed up for our anesthetic consult at 8 am instead of 11 am, when it was actually scheduled for. How did I write that down wrong? Anyway, it was my fault, but Matt managed to bite his tongue and let me off the hook for it...we just weren't allowed to speak of it until he had a coffee in his hand. When we got back for the actual 11 am appointment, we were left sitting and waiting for the anestitician until 12:30...we were really losing our patience when he walked in and apologized for making us wait and explained that he'd been researching SMA type 1 and the outcomes after surgery. He then explained that in the one major study he had read about with only 6 type 1 cases 2 babies/one third, didn't handle the surgery well. He went on to say that they were healthy before surgery and one of them died 11 days later and the other needed an emergency tracheotomy...something Matt and i had once discussed we'd never do. So, a surgery that Matt and I were feeling somewhat confident about, we were now feeling completely terrified about. Now I'm actually glad it was pushed back 2 weeks...what if it's my last good two weeks left with Charlie. But we can't push it back anymore. It's a double sided sword, Charlie needs to be really healthy to handle the surgery, waiting until she really needs it, means she's weaker and then the anesthetic can be more dangerous. Also, the doctor said that she's using all her energy just to eat right now, once we get the g-tube in, I can top her up with food at night so in the morning she'll have more energy from not having to work for her food as hard, and I'll have more energy because i will get more than an hour at a time of sleep (but that is the least of my concerns). That and it's inevitable that she'll need it, So, it needs to be done now, regardless of the risk involved.


Once my brain had computed all of the information we had unexpectedly cast at us, I became really depressed. I stayed in bed for two days, leaving the bedroom only to eat and make our Hawaii video...soaking up any residual calming and relaxing feeling that I could get from watching it.


Sometimes I wonder/worry if I'm obsessed with Charlie, and I usually come to the conclusion that i am. But I don't think it's unhealthy, I think it's just your average case of a mama bear doing everything she can to protect her cub. Before I was a mother and before I was in this situation with Charlie, I would sometimes dissect other peoples choices regarding what they should do in this situation, I thought that one should have limits-know when to give up and let go. I thought, "if it were me, I'd know when to let go." But I'm one of those people now, and I don't think I'll ever know when to let go, and I don't believe it to be selfish, it's just because she's a part of me...i can't even help it-it's innate, just built into a parent to protect their children at all costs.


I love Charlie so much that after 2 days of moping around the house, I decided to get it together again, for her. I mean she's such a good girl, so easy going, she would have stayed in bed with me for another month, thriving only off breast milk and Sesame Street, but it's not fair to her. Not fair when I know how much she LOVES to go for a stroll...so, I finally got dressed at 5 pm last night and took her for a walk...you should see her face light up when I put a jacket on her now...what once was torture to her, is now the best gift ever. So, I'm gonna finish up here and go get Charlie's jacket and make up for lost time.


Thursday, March 25, 2010

Thank god for Charlie.


Kona, Hawaii, March 2010.
The most amazing vacation ever! Someday I will call Hawaii home.
Also on youtube (better quality) @ http://www.youtube.com/watch?v=ESLGMUk-gdk

Monday, March 22, 2010

Happy 9 month birthday Charlie-Anne!

(Charlie and mommy, 8 1/2 months. Photo by Cindy Penner)


















Well, we're back. We had a fantastic time in paradise and now it's back to reality for the Cox's. Matt is already insanely busy with work, and I'm playing secretary again; making countless phone calls and trying to perfectly align Charlie's crazy schedule. I came home to a stack of mail from Canuck Place, the Children's Hospital, the BC Center for Ability, Genetics testing, the Red Cross...the holiday is officially over.


We had planned our trip around Charlie's g-tube surgery which was supposed to take place on March 25th...but, it looks as though there was some miscommunication with our pediatrician AGAIN, and it was cancelled and rescheduled for April 9th. We are a little frustrated with the change in plans because we had mentally prepared for the surgery and now the grey cloud is left to loom over our heads for another two weeks. Also, through research and the advice of others, we've learned that it is best to get the g-tube surgery ASAP to avoid complications; it should be done while Charlie is healthy because she will be put under with anesthetic and it can weaken her already compromised respiratory system. But, at least it's only two weeks away, and to be honest, I am going to use this g-tube free time to inhale what little normalcy we have left.


It's Charlie's 9 month birthday today. The older she gets and the healthier she stays the more hopeful we get. Yes, we've definitely seen a decline in Charlie, but, if we focus on her abilities, she's doing remarkably well considering her diagnosis of SMA type 1. The fact that she is still breastfeeding is almost a miracle...many babies that suffer/have suffered from SMA type 1 have lost/lose the ability to suck long before 9 months of age. That, and she still has partial movement from her elbows to her hands and can still lightly grasp objects such as feathers or straws. We are starting to look more at what Charlie CAN do instead of what she CAN'T do...looking at it that way helps us cope better, it's the silver lining.


It's funny to think that before Charlie's diagnosis, when we knew something was wrong but didn't know what, we went through all of the medical issues it could be (NEVER thinking it could be this serious) and thought about how we'd live with it...thinking of ourselves almost more than Charlie. We honestly thought that she'd have an undiagnosed case of hypotonia (floppy baby syndrome) and that she wouldn't walk until around 5 years old... looking back, we actually felt ripped off when we pictured a future of physiotherapists and leg braces...but now, that seems like a dream come true to us. The places one's mind visits when they are (initially) faced with challenges and adversity can be dark and selfish. We have since dropped almost all of our needs and are focused more on taking care of Charlie and her needs. I mean, we still pray for a miracle, but the definition of 'miracle' has changed for us. We no longer want/need her to walk, ride a bike, etc. we just want her to live a happy life, preferably long, to be pain free, and to keep smiling. We aren't perfect and still have our selfish days, but we really try to not let them overshadow how proud of her we really are. Charlie is an angel on earth who has taught me what it means to really love unconditionally and whole heartedly. In many ways, to quote my friend Cindy, we've "won the baby lottery."




Tuesday, March 16, 2010

Palm trees and waterfalls.

(Charlie and mommy, 8 3/4 months old, Hawaii)













Catastrophist, anxious, panicky, hypochondriac...these are just a few of the things I've been labeled as in the past (I've labeled myself with these terms as well). I am my mothers daughter, full of opinions and full of fear...of earthquakes, of flying, of driving, of health issues...you name it, it scares the shit out of me. BUT, I've always known my fears were irrational, and I've tried to face them...well, most of them...you'll still never catch me sky diving or riding a Harley on a cross Canada trip. I'm pretty good at convincing myself that I'd rather live while I'm alive, as opposed to avoiding everything "unsafe" just to live the longest and most boring life ever. So, when Matt and I got the news about Charlie, I had already pretty much prepared myself for just such a scenario...I thought. I had "prepared" to lose my mind in a circumstance such as this, to roll over and die, to be a lifeless zombie that my friends didn't recognize... but I'm not any of those things, I have pulled things out of me that I never knew existed. Seriously! I can still laugh, put make-up on, go to the gym, love my beautiful daughter with all of my heart...and not just because I have to, but because I WANT to. I have totally and completely shocked myself with what I am capable of...since day one with Charlie, my life has changed so much for the better, SMA or not.

I was always 50/50 about whether or not I wanted children, until I turned 30, then I started thinking about kids more and more. I thought I wanted one...I wanted to experience pregnancy and motherhood...but, I was really nervous about labor and giving up the life i was accustomed to living...was I ready to commit to diapers and a 9pm bedtime? Of course, in a very Cherie way, I worried about everything my entire pregnancy, but when I met Charlie I was instantly in love...she came out smiling, and Matt and I were honored to meet her. Any apprehensions I once had were gone...those days seem like forever ago... I lived 32 years before Charlie, but its the last year and a half that I remember the most and the fondest. It has been the most life changing experience ever.

With everything that's been going on I worry most about how I will be strong enough for Charlie. She doesn't even know that she's slowly dying. She has absolutely no idea. She is the happiest little girl ever. That's almost the worst part. Matt and I often look at her and she is grinning from ear to ear and we smile and point it out to each other, and than reality hits...like how can somebody so happy be dying?! It plays over and over in our heads. A rage bomb goes off inside of us when we can't shake the thought. Sometimes we talk about it and try to think of a way we'd be able to accept this situation better...like we'll think, "If she was slowly losing her mind, than maybe we'd understand and accept it better." But, she's not, she is smarter, more aware, more vibrant, than most babies, and it's because she only has her mind...so, we love that we have that, but sometimes that makes it worse too. Just being here and seeing beautiful two year old girls running into the pool in their cute little bathing suits hurts my feelings...yesterday we took Charlie into the kids pool and put her feet into a waterfall, it was a great moment for us; and when not less than ten minutes later another couple brought their 'normal' baby girl about the same age as Charlie into the water and re-enacted our toes in the water scene, we again got hurt feelings. We don't not want other children to be happy and healthy, I think it's just a natural envy that only time will heal...we'll get tougher.

Matt told me today that he read a story about a 17 year old girl who has SMA type 1 who was carrying the torch for the Vancouver Paralympics. I started crying after he told me. I felt bad...he told me because he was full of hope - I of course, became full of fear. I'm afraid that I'm not that mother who makes it happen for their child against all odds...every article you read with a story like this, the mom fought with schools, government, medical professionals, etc. Can I do this? Holy pressure! I know Charlie can, she's amazing...but will I/can I fight for everything she needs to live the best life she can? Charlie is teaching Matt and I something new about ourselves everyday, that's one of the positives in this situation. We have never been closer. I have never felt stronger. And we have never loved more.

We have 4 days left in Hawaii, it has gone by so fast. I can't even tell you how much we needed this time alone together. We will ALWAYS have Hawaii.

Friday, March 12, 2010

Bittersweet

(Charlie, 8 1/2 months)


















Well, we're almost half way through our Hawaiian getaway and it's been phenomenal so far! We've done a little exploring, relaxed with Tequila sunrises by the pool, gone to the beach, went to Huggo's On The Rocks (twice), a little restaurant on the beach that has live music, we have had AMAZING sleeps, and Matt has become the barbeque master; last night he grilled up the most delicious Ahi tuna dinner...we need a barbeque back home, I have a feeling it would make my life a whole lot easier.

While this time away with Charlie has been so wonderful, at times it's also been heartbreaking. We've never spent this much family time together since Charlie was born almost 9 months ago. We have had a lot of time to really focus on what has brought us here in the first place...our Charlie and her limited time here. This really is our first and last family vacation. Since Charlie's SMA diagnosis two months ago, we hadn't really seen much more of a decline in her mobility, until lately when things seem to have sped up. Charlie is starting to look and act more like the pictures/videos I've seen of babies diagnosed with SMA. She has swollen hands and feet from limited mobility, her head seems big because her chest is weak so it's remained small, and her belly bulges from overcompensating for the breathing her chest can't do, she has lost almost all head control, where she once turned her head to follow me in a room, now she only follows me with her eyes, her little body is very limp and we have to be very careful picking her up and putting her down, making sure none of her limbs gets tangled underneath her, which is more difficult than you might think. Her breathing is laboured and her chest rattles when we pick her up and when she coughs (or tries to) it looks so difficult for her and her eyes instantly water and go red around the edges, leaving Matt and I frozen with terror until it passes. At night when we sleep (she sleeps with us), she wakes up every hour or two to be turned over...I can't help but think about how awful it must feel to need/want to turn over, but being unable to...and the heavier she gets, the worse it must feel.

Lately when we go out, I can recognize when people notice that there is something "wrong" with Charlie. I almost just want to tell people and get it over with, but at the same time, I don't want to make people feel uncomfortable or darken their day. When Charlie was 6 months old, people just thought we were lucky and that she was just a calm little girl...actually, after her SMA diagnosis, Matt and I would cringe when someone would say, "Oh, what a calm little girl you have." But, now that she is almost 9 months and her symptoms have become worse, people notice right away that something is not right...there is no sitting up, no grabbing, and no crawling, and if they see us pick her up, it's obvious. I'm ashamed to admit this but, I actually lied once when somebody asked me her age, I said 6 months when she was around 71/2...I wasn't ready to talk about it then, or have anybody feel sorry for Charlie and blessed for themselves.

Two days ago Matt and I went for a scenic drive to go and see a black sand beach, and when we were driving back, I saw a lonely looking area with a Veterans Cemetery sign in the front...it got me thinking way too much. I was sitting in the back seat with Charlie and just started looking at her and thinking bad thoughts about funerals and my future without her, and lost it and began sobbing. Matt offered to pull over, but I told him to keep driving and what had triggered me in the first place...we were pretty quiet the rest of the drive back home. It's sad, sometimes I look at Matt and he's staring into space and I know exactly what he's thinking, I don't even have to ask...this happens several times a day. And when it happened last night after a lovely dinner and a sing song with Charlie, I asked the question I already knew the answer to, "Matt, what are you thinking? About Charlie? Are you OK?" He nodded his head and we both cried. I worry a lot about myself and my feelings in all of this, often forgetting about Matt's, and when I really see how it affects him, it scares me for us and our future...how will we ever be the same again?

Charlie is a beautiful soul. When I'm not worrying about my future without her, I'm marveling at how wonderful she really is and why I love her so much. She gives me the most intense eye contact, like she's talking to me with her eyes saying, "Mom, I love you." or "Can you put my shows on." And Charlie can really appreciate the little things in life, more than than the child on the go...a breeze, a feather in her hand, music, bath time when she can make her legs wiggle, and she just loves a nice long walk to stare at the trees and clouds above going by. The three of us go out for dinner and she loves to sit back and look around...she really seems to enjoy seeing Matt and I happy and having a good time. I really wouldn't want her any other way except with us longer.


Tuesday, March 9, 2010

Life is good.

(Charlie-Anne and Daddy, 8 1/2 months, Kona, Hawaii)

















Well...we made it! And all of us are in one piece! I'm actually writing this from a patio chair that overlooks palm trees that are dancing in the warm, sweet floral scented wind, and seem to be pointing toward the calm, crystal blue ocean just ahead of them, taunting me to come and join it. Ahhhhh, this is the good life.

After my last post, just when we thought we had worked everything out, things got complicated again. Our community health nurse recommended we call Air Canada and ask if they had oxygen on board, which after sitting on hold with them for over an hour, I was told they did...but, if we needed to use it, we would have a hard time flying home with them, because we would be deemed too high risk. AND, upon further investigation, we found out that it needed to be 'continuous flow' for an infant which it was not. And so started the process of finding, getting, and learning how to use a portable oxygen tank (you know, the kind you see an old overweight person carrying around with the tubing coming from their nose, and a cigarette in the other hand.) We found all of this out on Thursday afternoon and we were leaving Saturday afternoon. So, we needed to find an oxygen tank, get approval to bring it on the plane (without raising any red flags and being told we were a liability on the flight) AND we still needed to book two return tickets for our nurse who was kind enough to come down and back with us, but couldn't stay the entire time. Matt's employers booked and paid for our tickets and booked and paid for one of the nurses return tickets...they only had one first class ticket left so it was $2400.00, just for hers! We are VERY grateful! I'll never snap at Matt for working too hard/late again!

After many phone calls and much phone tag, (I was out doing the last minute trip errands, and had to pull over to cry at one point...wondering if it was even worth it anymore, and overwhelmed with just how serious this was all starting to feel) we found a tank at 4:30 in the afternoon on Friday in Delta. They were closing in a half hour, but sent a lovely lady named Jennifer to meet us at their Vancouver location to give us a crash course in saving our daughters life. Frightening. We brought along the other resuscitation mask and pump we were initially told would be sufficient, and were shown how to use it as well. Our flight was 6 hrs so we got 2 batteries with the tank, totalling 8 hours of available battery life.

Earlier that morning I had received a phone call from Canuck Place, a children's hospice, from a doctor who asked me "What are your wishes regarding resuscitation with Charlie?" "Ummm, what do you mean?" I said. "Do you want her resuscitated in an emergency situation? We need to know your wishes before travelling." Whoa. Harsh. I said, "As long as her brain is working, I want Charlie resuscitated." Our daughter is 81/2 months old...why do we have to think about these things? Way to start my already hectic day.

So, the trip was on. Again. We had all of our bases covered. All phone calls had been made. All equipment on hand and learned. All forms filled. All tickets booked. Saturday morning, 6 hours before we had to be at the airport, i called to confirm that we were allowed to bring our oxygen tank. The lady on the other end of the line said that Air Canada's doctor had approved Charlie to fly with her oxygen, except for one thing...we needed at least 11 hrs of battery life. Seriously?! Really?! Are you fu@*ing kidding me?! I looked around my bedroom for a hidden camera. This was starting to get pathetically hilarious. What next? Anyway, how was i supposed to find another battery on a Saturday? After another hour of phone calls, the lovely Jennifer, that helped us the day before, came to our rescue, driving from Vancouver to Delta and back again, on her day off, to help us out. And, finally, the scavenger hunt was over!

We met our nurse at the airport, and we all checked in without a hitch (they didn't even check for the 3rd battery. Grrrrr!) Now, I'm already nervous about flying so i was on edge about that as well as worrying about Charlie and if she could handle this flight or not. Matt took the first class seat and the nurse and i sat together with Charlie, so she could monitor her and i could breastfeed her during take off. As the plane took off and then leveled out, i stared catatonic like at Charlie's belly, watching her every breath, the nurse kept listening to her breathing. She was fine. And when i was REALLY sure she was fine, i wept uncontrollably. The stress of the week just built up and i was letting it go. I was so relieved. It's hard to plan ahead for 'just in case your child stops breathing'...I'm just glad that all of our preparation and training was completely useless.

Charlie loves it here! Minimal clothing, warm breeze, lots to look at, and a jacuzzi tub to swim around with mom in. Life is good.





Thursday, March 4, 2010

Stress Test

(Charlie, 8 months. Photo by Cindy Penner)








Holy Moly! What an INSANE past 3 days! After Matt received an email from a father of a 4 year old girl with SMA explaining to us that flying can be dangerous for children with SMA, I started to do my own research and found out that the air pressure in a plane can very negatively affect Charlie's already labored breathing, because she is so weak, and have SERIOUS consequences! Whoa.


When we were first given the news about Charlie's illness we immediately reacted with telling the neurologist and our pediatrician that we wanted to take a trip. As the weeks went by, and the severity of Charlie's terminal condition began to sink in, we thought about the trip and decided against it; we just felt like it was more for us then for Charlie. At Charlie's pediatrician appointment last month, the doctor asked us our vacation plans, when we said we'd decided against it, he explained to us how he didn't think it was selfish and that it would actually be good for all of us as a family to go and enjoy ourselves and make memories...so, we felt better about our vacation plans and went ahead and booked our trip. When we took Charlie for her monthly check-up at the pediatrician this week, we discussed what we'd been told by the father of the 4 year old girl, and asked,"was Charlie in danger?" He didn't think so and said he'd never heard of such a situation, but called our respirologist to be sure, he came back into the room and told us there were risks and that a lot of things had to be in place before we could go, IF we could go. Matt and I were very let down, a little because the trip was planned and booked, and a lot because we felt our pediatrician could have put Charlie's health in severe danger because he recommended something without researching it first. We trusted him and just believed in what he said and made decisions based on his educated advice.


Yesterday Matt called our pediatrician and told him that we felt let down by him and that our confidence was shaken regarding whether or not he could properly care for Charlie, he apologized and said he'd shoulder the blame. After thinking more about it, Matt and I forgave him and understand that because SMA is fairly rare (I'd never heard of it before Charlie's diagnosis) we can understand that he probably hasn't worked with many children with SMA and is learning more about it as we go along, but we also realized that we need to be Charlie's number one advocates, and research everything on our own as well...two heads are better than one.


So, that leads us to where we are now. With the help of our pediatrician, friends, Matt's bosses, our community health nurse, a medical supplier, Fed Ex, Air Canada, and Charlie's home nurse...our trip to Hawaii is going ahead this Saturday! We have been provided with a nurse who will do two return trips to Hawaii to accompany us on the plane there and back, staying a few days in between to help us out. We are very grateful. Fed Ex is delivering a ventilator (in case we need it on the plane) tomorrow morning...they didn't have an extra one available in town for us, so they had it flown out. We've also called the airline and requested the bulkhead seats and a basinette and made sure they had oxygen on board. So, we're all set! I can't say I'm not nervous though, I am not ready to see IF Charlie is in danger and needing CPR or oxygen, and if something happened to her, I don't think I could forgive myself. This is all strictly precautionary, but still totally nerve wracking. We love her so much, and when we get there safe and sound, I know we'll make memories that will carry us through some very dark days in the future. I can't wait to smell the hibiscus flowers and dip Charlie's toes in the ocean!















Monday, March 1, 2010

Aloha

(Charlie, 4 1/2 months with daddy. Photo by Cindy Penner)












So, it's been a bit of a rough week. I think starting this blog and making the video of Charlie (which i've watched crying, a MILLION times) really made things real. it's weird, this blog is to express my emotions about Charlie and her SMA diagnosis, yet I'm trying not to sound too depressing...I don't want to bum anyone out (if anyone is actually reading this) and I don't want to be pessimistic, but I want to be real and honest, and a lot of days, this REALLY sucks. To be honest, I'm often jealous of your healthy children...sometimes bitter, and almost always I feel right ripped off in life. I stare at families with two or three children and think, "wow, you've won the genetic/chromosome lottery, I hope you know how lucky you are." I stare at kids running around and think about neurons and synapses and all that it takes to perform this miracle that we all take for granted.


I'm ashamed to say that when I found out I was pregnant the first thing I thought was, "I hope it's a girl." Not, I hope the baby is healthy. And, throughout my pregnancy I almost never even worried about whether or not Charlie would be healthy, I just hoped she'd be cute and colic free. I just assumed perfect health was a given...I mean, drug addicts have perfectly healthy babies all the time...I took my vitamins, avoided sushi, non pasteurized cheeses, alcohol, drugs, and cigarettes, what's to worry about? I would often break mine and Matt's faces down and dream of what she'd look like...my hair, Matt's ears, my lips, Matt's eyes, and so on...never considering that none of that even mattered if she wasn't healthy. Needless to say, she came into the world more beautiful than I ever could have imagined, but also, more unhealthy than I ever could have imagined.


Today Matt and I went to genetic counselling. They broke down how SMA works and explained how we were most likely both carriers and then took down our family history's. When we were each going through our family history I thought "wow! it really is like winning the lottery when you actually have a completely healthy child...and it shouldn't be taken for granted!" I actually feel like we're all lucky to make it to any age...and we should really appreciate and enjoy ANY time we have! But, I can't help but feel a little guilty and a lot tainted about carrying this "bad" gene around...I feel like my genes come from the wrong side of the tracks. I know it's ridiculous to think that, but the thought just nags at me, and I often wonder if any one's judging us because of it.


We were told that we have a one in in four chance of conceiving another child with SMA, and today the counsellors explained the different testing we could do to find out. One test (CVR?) we can find out at about 12 weeks along, and we have a 1/100 chance of miscarrying from, and the other test at about 19 weeks with a 1/200 chance of miscarrying from. And, if the test comes back positive, we'd need to discuss where to go from there. So...pretty heavy duty stuff to think about.

All and all a pretty heavy week. We are really looking forward to Hawaii! Let the countdown begin...5 days to go.